MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Expand/ Collapse Topic
 
Replies By
View Topic

I have been on Opdivo treatment for 2 weeks and am continuing Tafinlar capsules twice a day for 2 more weeks. I know that the Opdivo is very new. I am only the second patient at M D Anderson Melanoma Clinic to be on this treatment. Just curious if there is anyone else on the Opdivo on this site that I can compare notes with. I was diagnosed 5/5/2012 and have been fighting like hell every since. I feel so blessed that the Opdivo was fast tracked through the FDA and is available right when I need it.

Login or register to post replies.

Hello

I was hoping to connect with any patients of Dr. Hogg who have Stage 4 melanoma.  My husband, Pete, is a patient of his.

 

Yasmin

Login or register to post replies.

Kdw2012's picture
Replies 3
Last reply 2/28/2015 - 10:37am

I suffered two seizures on February 22. I have completed Yervoy February 5 they believe the Yervoy may have caused a flare of these tumors. These brain tumors have all occurred since November. I am now going to be starting Keytruda on Thursday March 5. 

Has anyone else had similar issues and if so what kind of success have you had with Keytruda and how quickly?

Kim Wright

Login or register to post replies.

MixtaJones's picture
Replies 3
Last reply 2/28/2015 - 10:30am

Hello everyone,

It has been a very long time since I have visited this site but I figured it was time to swing by and post something that should give people so hope just like many of the post I read.

It has been almost a year since I found a lump under my arm which led to a diagnosis of Early Stage IV Melanoma. I say early because it had spread to all of my lymph nodes in my upper left axilla and they were not able to remove all of the tumors. I did not have distant tumors but it had spread enough to get me to the stage IV classification. Most would say that is a bad thing but it was a blessing that I didn't realize till much later.

I had surgery to remove 22 lymph nodes under my arm followed by radiation which left me with about 7 tumorous lymph nodes in my collar bone area. Because I was diagnosed with Stage IV I was able to go straight on Yervoy and did 4 rounds that finished up on July 11, 2014. My 30 day scan showed that the tumors will still there and slightly smaller. The big surprise was at three months. All of the tumors were GONE!!! No sign of them! I just had my 6 month scan and I am still clear!

Even though I had 22 lymph nodes removed I have had not a single sign of lymphedema. even though I went through radiation and had Yervoy infusions I had very little side affects. Even though a year ago the doctor told my that I had a very tough fight ahead of me I am here alive and well. I know it is relatively early in the game to claim victory but I feel that cancer has lost this battle.

I know not everyone out there will have the results I have had. I know every ones situation is different. But for those of you who have just been Diagnosed and have read all the scary data out there please know that Melanoma is not a death sentence. For those of you that have been fighting this monster for a while, Please don't give up. There is hope and soon cancer will be a thing of the past.

Philippians 4:13 "I can do all things through Christ who strenghtens me"

Login or register to post replies.

mrsaxde's picture
Replies 1
Last reply 2/28/2015 - 6:41am
Replies by: Mat

I finished the treatment course with Yervoy in January. Went back for a post treatment scan a week ago, and the results are encouraging. Several questionable areas, including one on a lung, that were new in November, but weren't "hot" on the PET scan, are unchanged, and still not hot. I do have one area that was mildly hot ("warm" my oncologist called it) with an SUV of 3.03, on my back.

Throughout the treatment I've been dealing with the typical rash, and I've been on prednisone for over two months now. But, all through the time between the infusions, the rash was the only issue.

About a week after the last infusion, a pain developed between the bottom of my ribcage, and my navel. My doctor thgought it was due to the prednisone, and advised me to take Maalox. That seemed to help for a while, but soon it got worse, and became more widespread throughout my abdomen. Maalox no longer provided any relief.

For about a week now, I have been unable to eat much of anything. Almost everything I eat gives me pain, gas, diarrhea, and bloating. I was told to take Immodium for the diarrhea, and to help the pain. It helps, but not completely. It was also recommended that I try the BRAT diet (bananas, rice, applesauce, toast), but not even those are very tolerable, unless taken in very small amounts.

After that long introduction, my questions:

I'm wondering if anyone else who has been given Yervoy has experienced a worsening of side effects after the treatments ended, and if so, how long did it last before they began to subside? Also, does anyone have any recommendations about things I could try to eat? I've lost 10 pounds in just over a week.

Login or register to post replies.

Julie in SoCal's picture
Replies 2
Last reply 2/28/2015 - 6:46am
Replies by: Mat, Nell

Hi there Friends!

Well, I saw my Rock Star Doc today and he confirmed it; melanoma is back.  It's still small but it's growing (from rice grain to pea size is 3 weeks.

So, the plan is: Full set of scans (PET/CT MRI Brain) next week Wed  to see if it's gone anywhere else.and following that, Keytruda.

My options are to 1) resect the sucker and watch and wait to see if another one pops up, 2) reintroduce Ipi (I had a good response to Ipi the first time, seems reasonable I would have another good response), 3) do PD-1 -Keytruda.  I'm thinking I'll take the more global chance fpr

It's still early in my acceptance of all of this, but I know that this will mean major changes across the board, and It's going to take a while for my hear to catch up.  But it will, and it will be good.

Thanks friends for listening, and caring.

Shalom!

Julie

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PD-1?

Login or register to post replies.

Teochasse's picture
Replies 5
Last reply 2/28/2015 - 10:45am

I have been very hesitant in posting this since so many people are facing real uphill battles with this nasty disease but I would like to share a message of  hope for anyone who might need it  that it is possible to overcome this cancer against all odds.

I just have  found out that I have been downgraded to  only one PET scan a year since  I have reached the  5 year mark  since  being diagnosed with an extremely rare and aggressive melanoma.This is a major milestone for me since I barely survived a life saving emergency surgery  with a major blood transfusion in 2010 and I was being told basically to get my affairs in order shortly. In my wildest imagination I would not have dreamed   to live to see that day,but here I am NED 5 years on. I don't assume by any means that I am cured,but it still  feels amazing to have lived trough it all,  be still around and get a chance to further  move on  with your life.And yes, I  do get to  experience the Survivors guilt on occassions.

I wish all patients and their caregivers strength,courage and resilience, remember that you have every chance of coming on top of this disease as long as you live and  refuse to stop fighting.

"...life has a funny way of sneaking upon you.

and life has a funny way of helping you out when

you think everything's gone wrong and everything blows up in your face".

 

 

 

Teodora Chasse

Login or register to post replies.

This article came across my feed and sounded interesting so I looked for the trial.  Melanoma is one of the cancers they are accepting for the trial.  Doesn't say brain mets are a disqualifier and they think it will work on brain mets.  Phase I so you're definitely a "rattie" if you choose this trial but if I was a non-responder to Ipi or PD-1 I'd definitely consider it.  Looks like it's only in Chicago right now.

http://medicalxpress.com/news/2015-02-cancer-drug-pet-dogs-human.html

https://clinicaltrials.gov/ct2/show/NCT02355535?term=pac-1&rank=1

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 2/28/2015 - 10:33am

I have melanoma mets in both lungs and in the bones through out my body ( lots in hips and spine and ribs). I have tried IL2 (no response) Braf Combo ( worked for about 3 months) and IPI ( no response) and now am doing PD1 which seems to not be working as well.... What drugs and treatments are out there and should be on my list to try? Any help in this matter would be so appreciated. I live in the US east coast.

 

Thank You

Login or register to post replies.

hass71's picture
Replies 2
Last reply 2/27/2015 - 3:27pm
Replies by: Anonymous, joelcairo

hello

my wife had her second infusion of Keytruda the anti PD1 by Merck after failing Yervoy, we are expecting to have low response due to the large sizes of the tumors but this is our last hope after doing chemo and radiation for the brain and being negative on BRAF, has any one been on this treatment to share his experience and inform us with the side effects.

I've a question, melanoma in our country is rare but from what i read i can see that most of who get treatment are coping well with it somehow but i see my wife from the day she started treatment with chemotherapy  and getting worse, she lost her hair since that and after that a while did a whole brain radiation and since then her hair didn't grow yet, she's in bed 90 percent of the time in pain and not able to lift her self up, has no appetite to eat and losing weight and the doctors gave me no explanation but that it's because of the disease, is that normal? and what can i do to change this situation?

Login or register to post replies.

arthurjedi007's picture
Replies 6
Last reply 2/27/2015 - 10:09pm
Replies by: Lil0909, Anonymous, SABKLYN, yazziemac, kpcollins31

Back in 2013 when this all started I changed my diet to more natural non processed stuff. I attribute a lot of my weight loss to that. No matter what I ate though I never have been able to regain weight loss.

However more recent I rapidly in about a week lost 6 or so pounds due to a swallowing issue before the radiation fixed it. Once fixed I still could not gain weight no matter what I ate even pizza. Now I'm losing weight I guess because the radiation has messed up my stomach so diarrea which still is not in control although thought it finally was until again last night and even threw up.

Im almost to my high school weight so I'm trying to find a way to regain my weight loss. I even ate some fairly healthy processed snack foods but no success.

I did find at GNC the old weight gainer I did when I was young and working out. I imagine that would put the weight on me. About 2000 calories per scoop in a glass. But it talks about how it helps create and restore new veins to muscles making them stronger and things. That is all I need is to help the tumors create more veins to make them stronger too. So I'm afraid using it would be worse.

im not very healthy anymore. I can walk a few minutes with a cane.

 So I dunno is there a healthy way I can gain weight? Something full of calories or whatever helps us gain weight?

Artie

Login or register to post replies.

yazziemac's picture
Replies 2
Last reply 2/27/2015 - 10:36am
Replies by: arthurjedi007, Gene_S

Hi everyone

We found out 2 days ago that Pete's melanoma has spread again.  As I posted previously, he had a brain met in November, followed by a craniotomy and gamma knife radiation in Nov/Dec 2014.  He had a PET scan in mid February which showed mets in liver, spine, and muscle.  He's going to start Yervoy on March 11.  We are in Canada and the drug protocols here require that he have one dose of Dacarbazine before he qualifiies for the Yervoy, and must fail the Yervoy before being able to start Opdivo (Nivo).  He had the Dacarbazine yesterday.  I am hoping that he doesn't have serious side effects from the Yervoy and that he responds, but our oncologist said there is only a 25% response rate to Yervoy, which isn't great.   I read the forum postings every day and learn so much from everyone here.

 

Yasmin

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 2/27/2015 - 3:37pm
Replies by: joelcairo, tschmith, Squash

Hi everyone,

A parent of mine was recently diagnosed with metastatic melanoma in Oct of 2014. BRAF positive & currently on Taf/Mek combo, doing very well on both. Tumors have decreased by 20-60% in the brain, liver, lung & adrenal glands over the course of 3.5 months. Super grateful! 

As a family, besides finding a good team of doctors (which we were fortunate to get at Hopkins), we are trying to find other ways to help out. Determined to attack this monster from all possible angles! One thing we've heard many recommend is to change nutrition. We eat very healthy but are def interested in tailoring diet towards a strong, melanoma fighting super-body! 

Along with the taf/mek drugs, and steroids for edema & keppra as preventative for seizures, been giving:

*daily multivitamin

*echinacea

*biotin (for hair growth, post WBR)

In terms of food, we've tried to fuel up on: 

*salmon

*flax & chia seeds

*coconut oil & water

*almond milk (for calcium)

*dark greens (kale, spinach, brussel sprouts)

*turmeric 

*berries & citrus fruits

 

Questions that I'm hoping you all can (please) help with:

(1) Of all the "cancer super foods"  & supplements which have experience shown are *actually* important for adv. melanoma? Any validation for ones I listed above? 

(2) We ran into some trouble with echinacea...high ALT liver # and echinacea may have been to blame...were originally giving this supplement to boost immune system & help prep it for immunotherapy... and now I'm reading mixed opinions on turmeric (some say this interferes with Mek/Taf combo?) and have also read some mixed opinions on calcium. Any seemingly smart choices that actually do more harm than good? 

(3) What foods are taboo & should we absolutely refrain from (heard rumors of red meat, dairy, even carbs?...)

(4) Any other important lifestyle changes? exercise?

(5) Any specific foods/supplements/activities known to help with brain mets/brain recovery?

(6) What have you all taken to prepare for (and power through) immunotherapy? This is the next step for our family so we want to start preparing body now :)

Thanks a million! Any help would be appreciated! This forum is invaluable :) 

Login or register to post replies.

TOKYO -- Anyone who has suffered through a lingering cold has firsthand experience that viruses are resilient, annoying pathogens. But our opinion of viruses might improve a great deal if they could be trained to fight cancer.

Researchers at Tottori University and the University of Tokyo's Institute of Medical Science are doing just that. So far, the results are promising. They have confirmed the safety and effectiveness of genetically engineered smallpox and measles viruses in attacking cancerous tumors in animal trials. The bugs are altered to keep them from infecting healthy cells, then injected into the bloodstream to do their work.

Researchers at both institutions believe the method could lead to new cancer therapies to supplement surgery, chemotherapy and radiation. But first, they must confirm the effectiveness and safety of the new method in humans.

Cancerous tumors grow by creating blood vessels that feed them. When a therapeutic virus is injected into the bloodstream, it circulates through the body until it reaches the tumor. It then infects the cancer cells. The virus kills the cancer cells as it spreads through the tumor, causing it to shrink or disappear. The viruses can also be used to stimulate the immune system to attack the cancer cells.

Targeting cancer

A research team led by Takafumi Nakamura, an associate professor at Tottori University, has come up with a way to target malignant cells in lung and pancreatic cancers using the vaccinia virus, which is used in smallpox vaccines. The team genetically altered the virus so that it multiplies in cancer cells but is harmless to healthy ones.

The researchers injected human pancreatic cancer cells into the abdomens of mice, causing tumors to grow in them, then injected the mice with the virus. They found that more than 90% of the cancer cells had died. "The virus was originally used in vaccinations, so it is very safe," Nakamura said. His team hopes to confirm the safety of the virus in animals closer to humans, including monkeys, and start clinical trials in five years.

Professor Chieko Kai and her team at the University of Tokyo's Institute of Medical Science have developed a method that uses a measles virus to treat breast cancer. The researchers found that the virus infects breast cancer cells by sticking to a protein, PVRL4, on the surface of the cell. As with the Tottori University trial, they genetically altered the virus so that it multiplies only in breast cancer cells.

When the virus was injected into mice implanted with cancerous tissue, the cancer grew little and most cells in the tumors died. When the virus was administered to healthy monkeys and dogs, it had no apparent side effects or safety problems. "The likelihood of the virus infecting noncancerous cells is low," Kai said. She wants to start clinical trials as early as 2016.

Treatment without trauma

Viral therapies are likely to be easier on patients than surgery and chemotherapy. And as the virus moves through the bloodstream, it can attack small malignancies that escape the surgeon's knife, as well as metastatic cancers.

This approach, while promising, is not without drawbacks. The patient's own immune system may kill the viruses before they reach their target. The more they are used, the stronger the body's immune response is likely to be. Devising effective treatments therefore means coming up with bugs that can evade the body's natural defenses.

There are also concerns therapeutic viruses may mutate in the body and attack healthy cells. The safety and efficacy of injected viruses have so far been confirmed only in animal experiments. And the long-term effects of these viruses on humans have yet to be studied. Researchers will have to find ways of dealing with potential side effects.

Tomoki Todo, a professor at the Institute of Medical Science and a leader in the field, started a clinical trial in late December for a brain tumor treatment that uses a genetically modified herpes virus. So far, there have been few side effects and therapeutic effects have been confirmed, Todo said.

Viral therapies offer new ways of fighting disease, but work remains before viral weapons can be deployed in the battle against cancer.

(Nikkei)

Nikkei Digital Media Inc.

Login or register to post replies.

Chemotherapy and radiation failed to thwart Erika Hurwitz's rare cancer of white blood cells. So her doctors offered her another option, a drug for melanoma. The result was astonishing.

Within four weeks, a red rash covering her body, so painful she had required a narcotic patch and the painkiller OxyContin, had vanished. Her cancer was undetectable.

''It has been a miracle drug,'' said Mrs. Hurwitz, 78, of Westchester County.

She is part of a new national effort to try to treat cancer based not on what organ it started in, but on what mutations drive its growth.

Cancers often tend to be fueled by changes in genes, or mutations, that make cells grow and spread to other parts of the body. There are now an increasing number of drugs that block mutations in cancer genes and can halt a tumor's growth.

While such an approach has worked in a few isolated cases, those cases cannot reveal whether other patients with the same mutation would have a similar experience.

Now, medical facilities like Memorial Sloan Kettering Cancer Center in New York, where Mrs. Hurwitz is a patient, are starting coordinated efforts to find answers. And this spring, a federally funded national program will start to screen tumors in thousands of patients to see which might be attacked by any of at least a dozen new drugs. Those whose tumors have mutations that can be attacked will be given the drugs.

The studies of this new method, called basket studies because they lump together different kinds of cancer, are revolutionary, much smaller than the usual studies, and without control groups of patients who for comparison's sake receive standard treatment.

Researchers and drug companies asked the Food and Drug Administration for its opinion, realizing that if the F.D.A. did not accept the studies, no drugs would ever be approved on the basis of them. But the F.D.A. said it sanctioned them and could approve drugs with basket study data alone.

Instead of insisting on traditional studies, said Dr. Richard Pazdur, who directs the F.D.A. office that approves new cancer drugs, the agency will look at the data and ask, ''Is the American population going to be better off with this drug than without it?''

These are the sorts of studies many seriously ill patients have been craving -- a guarantee that if they enter a study they will get a promising new drug. And the studies move fast; it does not take years to see a big effect if there is one at all.

In Mrs. Hurwitz's case, the mutation in her rare cancer is in a gene, BRAF, found in about 50 percent of melanomas but rare in other cancers. She is among dozens of patients with the same mutation, but different cancers, in the new study that gives everyone the melanoma drug that attacks the mutation.

Basket studies became possible only recently, when gene sequencing became so good and its price so low that doctors could routinely look for 50, 60 or more known cancer-causing mutations in tumors. At the same time, more and more drugs were being developed to attack those mutations. So even if, as often happens, only a small percentage of patients with a particular tumor type have a particular mutation, it was possible to find a few dozen patients or more for a clinical trial by grouping everyone with that mutation together.

In a way, this is a leading edge of precision medicine that aims to target the drug to the patient. Unlike previous efforts that looked for small differences between a new treatment and an older one, with basket studies, researchers are gambling on finding huge effects.

''This is really a new breed of study,'' said Dr. David Hyman, a cancer specialist at Memorial Sloan Kettering who directs the study Mrs. Hurwitz is in and two similar ones.

And they are seeing some unprecedented responses, along with some failures. The responses, though, can be so striking that control groups might be unwarranted or infeasible, Dr. Pazdur said.

''Conventional therapy might give a response rate of 10 or 20 percent,'' Dr. Pazdur said. ''The newer drug has a response rate of 50 or 60 percent. Does it make sense to do a randomized trial?'' And even if a trial were planned, he said: ''Who would go on that trial? Would you go on that trial?''

''When you are having a big effect, it is kind of jaw dropping,'' Dr. Pazdur added. ''These are response rates we haven't seen before in diseases.''

But these are still the early days, researchers caution. ''It is a different world we are walking into,'' said Dr. Daniel Costa, a lung cancer researcher at Beth Israel Deaconess Medical Center in Boston. ''And we are learning as we go along.''

The new studies pose new problems. With no control groups, the effect has to be enormous and unmistakable to show it is not occurring by chance. When everyone gets a drug, it can be hard to know if a side effect is from the drug, a cancer or another disease. And gene mutations can be so rare that patients for a basket study are difficult to find.

The rarity of the mutations, in fact, is one reason for the new national effort, supported by the National Cancer Institute. Its study, called Match, is essentially a basket of basket studies. Doctors around the country will be sending tumor samples from at least 3,000 patients to central labs that will examine them for mutations. Those with any of a dozen or so mutations in their tumors can enroll in studies of drugs that target their tumor's mutation.

Dr. Keith Flaherty of Massachusetts General Hospital, principal investigator for the Match trial, said the number of baskets was uncertain -- it would depend on the number of drugs. But he expects 12 to 15 baskets to start, expanding to perhaps 40 or more. There will be 31 patients per drug.

He anticipates mixed results. ''We are exploring an unknown space here,'' Dr. Flaherty said. ''But it is essentially impossible for this whole set of baskets to fail.''

To show what is possible, Dr. José Baselga of Memorial Sloan Kettering points to preliminary results he presented in December for the basket study that includes Mrs. Hurwitz.

Among 70 patients, there are eight types of cancer. Eighteen patients had one of two very rare cancers, Erdheim-Chester disease or Langerhans disease, the cancer that struck Mrs. Hurwitz. Of them, 14 responded to the melanoma drug -- their tumors vanished, shrank or stopped growing -- and the remaining four have not been taking the drug long enough to say.

''Unbelievable,'' Dr. Baselga said.

''This is working in a way that is clear, that is unprecedented,'' he said. ''I don't have enough patients to do a Phase 3 study,'' he added, referring to the large, randomized study traditionally used to test new drugs, ''and I even question the morality of it.''

But others in basket studies have not fared so well.

Eleni Vavas entered a basket study at Memorial Sloan Kettering hoping to stop the stomach cancer that was killing her. The study, said her husband, John Vavas, ''was our last-ditch, Hail Mary effort.'' His wife, who was 36, entered it last spring, the only patient with stomach cancer. But, Mr. Vavas said, ''she just didn't respond.''

She died on July 1.

Erika Hurwitz's cancer of white blood cells is now undetectable, after she entered a trial that uses drugs that block mutations. (PHOTOGRAPH BY GREGG VIGLIOTTI FOR THE NEW YORK TIMES) (A19) 

The New York Times Company

Login or register to post replies.

Pages